confused and anxious

[April2018]

After several phone calls to my GP and Rheumatology department, I had a phone call from one of the registrars from the Rheumatology department this morning. Thanks to you all , I knew about the importance of making some notes before my appointment so that I could report my symptoms and ask further questions. I have been on hydroxychloroquine over a year but no improvement in the level of fatigue and pain I have been experiencing which got a lot worse since last year. I was prescribed high doses of vitamin D but again no improvement. I am sensitive to the direct sun (I apply 50 plus sun cream everyday) and cold weather (especially my hands, fingers are affected) but no remarkable changes in colour. I am noticing swelling in my feet/ankles and hands recently. And again, thanks to you all, I learned about the 'spoon theory' started recently managing my symptoms better.

I got diagnosed with an autoimmune disorder which the consultant noted that the symptoms were consistent with systemic lupus. Until today I was thinking I had lupus. The initial blood tests were ANA positive. I noted in the last letter I received from the hospital following blood tests that lupus wasn't mentioned. it was this time 'Undifferentiated Connective Tissue Disease'. This was something I wondered about. This morning the registrar told me that the latest blood tests were ANA negative but ANCA positive and she mentioned 'Vascilutis' and ordered new blood tests . Unfortunately it seems like I had to have urine test as well which wasn't done during my last appointment. I will now need to have it done and depending on the result, I may need to see a kidney specialist. My first diagnosis were 2 years ago but had the symptoms for at least for one year or more. Although the blood tests were ANA positive, they only referred to me to the hospital a year later. The GP thought I had fibromyalgia. I am just confused at the moment. I know that I will only know more once the tests are done still cannot help but feel a bit worried. Many thanks for reading this.

[Insomniacette]

April2018 I'm so sorry for what you're going through, you're in the toughest bit, the not knowing zone. But I thought I'd take a moment to highlight some things you've written that also show things to feel good about.You've very clearly taken control of your situation. You're not letting it control you. You advocated for yourself, you researched and armed yourself with all you need. That's something to feel really good about I think and to be congratulated. Whatever emerges, these qualities will stand you in good stead going forward. I won't tell you not to worry until you need to, because we all do anyway! But I hope you can take some comfort in the knowledge that the not knowing part will eventually end and that your inner strength is clearly in existence because it pours out in your post.

Much love to you. Keep us posted.

[April2018 in reply to Insomniacette]

Thank you so much for your encouraging and supportive comments. They mean a lot. Much love also XX

[Villagelife]

Keep strong and positive sometimes this isn't easy but by keeping your mental health strong it will enable you to work at maintaining your physical health. Not knowing is so hard. Im still learning about lupus plus other autoimmune diseases. Its difficult because it can affect any part of your system. I dont know about you but I seem to notice every little change, swellings, niggling pain or soreness and wonder if its connected. Im going to Google the spoon theory, I've not heard of it before. Take care😘

[April2018 in reply to Villagelife]

Thank you! I found the spoon theory extremely helpful in understanding and managing the condition. xx

[Tbrz]

Hi, sorry to hear you are going through this. You said your doctor mentioned Vasculitis. This is an extremely serious disease and you need to push your doctor to get you referred to a rheumatologist for further immediate tests. You can go to the vasculitis website where they have valuable information do you can ask the right questions, make sense if your blood results and can direct you to specialists in your area, should it be vasculitis. I hope you get a diagnosis soon. Best wishes 😊

[April2018]

Thank you. It was the registrar from the rheumatology department who mentioned vasculitis yesterday morning. I've checked/compared the last two blood test results. Although both show positive ANCA no one seemed concerned before. The rheumatologist commented in the last letter following blood tests that they were stable. It was only when I complained to them that I was struggling. Thank you again. XX